Finally, after five months of neurological symptoms the third Neurologist is going to treat me for lyme disease based on my CF result and presented symptoms. I have been given oral antibiotics and have been told IV will commence next week. My symptoms are light, sound, touch over-sensitivity. Tinnitus, burning skin. Body tremors and spasms. Loss of cognitive skills, eye movement, disassociation and insomnia. Has anybody had iv or oral medication? Did it stop any of your symptoms?
Hi, good luck with that. Oral antibx in various cominations (doxycycline, amoxicillin, fasigyn) didn't work for me. IV was not offered to me, and still hasn't been offered despite continuing symptoms and acutely positive blood test results. Are you in the UK?
Hi, Yes I am in the UK. Its been a massive fight to get any help. Mine has crossed to the brain and i am suffering.
I have had a third opinion yesterday from a neurologist. My CF result showed some signs of antibodies and he decided to treat me on my symptoms. Gave me doxycyline yesterday and said he will call Monday regarding IV treament. I have been off work for 5 months but I am using their Bupa scheme.
NEVER GIVE UP.
My wife has been struggling with Lyme for years here in the USA. She finally found a Lyme expert over here that has helped her immensely. She certainly still struggles with extreme symptoms at times, but has found an antibiotic regimen that works for her. She waits still symptoms appear, then clobbers those bugs with massive doses of doxy for about 5 days, then she's free of major symptoms for about a month, when it happens all over again.
Please don't ever give up hope. Keep plugging away, and then PRAY. Or visa versa, PRAY, and then do everything you can.
Thanks Bob. Sorry to hear about your wife. I have Just been informed the neurologist now wants to see me on Wednesday. Contacted Bupa and they state that as soon as Lymes has been diagnosed there will be no further support. As it is classed as a chronic condition. Which contradicts our NHS system in the UK as they do not recognise lyme as chronic. So yes all we can do is pray my friend.
Good luck with your IV and please do keep me posted on how it goes. I have been refused IV treatment by infectious disease specialists and GPs despite a positive blood test and still acute symptoms four years on from bite.
Seeing Neurologist this evening. Although he has promised IV. Bupa have stated that they do not treat Lyme because it is a chronic illness. So I will probably be referred to the NHS who do not recognise Lime as a chronic illness. So really I think it will be a waste of time to see him.
Really had enough, five months ago I had never heard of Lime. Worked full-time and ran a successful company. Now I stay at home everyday typing in sunglasses because of photo-sensitivity.
What are your symptoms?
Hi again, I looked through your symptom list and mine are pretty similar, though with varying degrees. All I can say is that decent sleep has been key recently in getting me through the day, and what seems to help at the moment is a few key supplements in quite large doses taken first thing in the morning: CoQ10, garlic, magnesium, Vit C, zinc, cat's claw. The other symptoms continue but those supplements generally mean that I'm not lying on the sofa after lunch in a darkened room feeling terrible.
hope you’re feeling better. did the antibiotics help with your symptoms ?